Written by Prof Irene Tuffrey-Wijne, Project Lead, Kingston University

Welcome to this brand new blog for The Victoria & Stuart Project (If you don’t know what this project is about, see here).

Let me start with a personal question:

Have YOU done your end of life care planning?

I’m asking, because if we want to involve people with learning disabilities in their own end of life care planning, it helps if we know what it’s all about. It helps, particularly, if we are speaking from experience.

If your answer is “No, not yet, but sure, I’ll get round to it one day – when I’m older” then you may have some sympathy with one of our research participants with learning disabilities, who pondered whether he’d want to think about his end of life plan at the age of 29. He said:

"If you were to ask a 29-year old without a learning disability whether they’ve done an end of life plan, I would put money on it that all of them would say NO"

Good point. Yet, nobody wants to be in unexpected situations, emergencies or changes in circumstances that need decisions, without having some sort of clue what the person at the heart of it really wants. People with learning disabilities themselves certainly don’t want things to happen in their life (or indeed in their death) that go against their personhood or that would make them feel particularly unsafe or unhappy.

So it’s a puzzle. How to get end of life care planning right for people with learning disabilities? When? How? Who should be involved? These are the questions for the Victoria & Stuart project.

We are a large group of researchers and collaborators that have people with learning disabilities at its heart. I am particularly proud of the four researchers with learning disabilities on our team (you can watch them talk about their job here).

Together, we are doing all sorts of things to find answers to our questions. We have asked people about their thoughts and opinions (we’ve held 10 focus groups and some interviews). We’ve combed the literature.

This month, we start meeting with a “Co-Design group” (Jargon alert! Richard, my research colleague who has a learning disability, has suggested calling it the “All Together Group”, so we’re sticking with that). It includes eight people with learning disabilities, parents, support workers, services managers, learning disability nurses, palliative care doctors… Together, we will look at what we’ve found so far, and come up with a set of resources and guidelines that look most promising. We’ll give that to our collaborators, MacIntyre and Dimensions, who will test it out with some of the people they support.

There will be lots of questions, thoughts and puzzles on the way. We will start sharing our progress (or our lack of progress) with you. Every week, someone who is involved in this project will tell you about something that has happened, some thoughts we’ve had, or questions we’re stuck on. Follow us, and you may be able to help us, by commenting on this blog for example.

The more people that help us to think all this through, and the more people who challenge us, the better. After all, this project is not for ourselves – it’s for you, whoever you are, having read this far.

Now, coming back to my initial question: Have you done your end of life care planning? It seemed like a simple question, but we are discovering that it’s anything but. Because we really need to ask something else first:

What is end of life care planning?

It turns out that the answer to “Have you done it?” depends on what “it” is. Some (in fact most) people we talked to, talked about FUNERAL PLANNING. Some people had done this; many had not; most thought they should, or were interested in doing it; although some (including a number of people with learning disabilities in our focus groups) thought they’d get to it later. Not when they are 29. Perhaps when they’re 50.

But others (mostly the professionals with experience of end of life care) talked about CHOICES FOR CARE WHEN YOU’RE TERMINALLY ILL. Would you want to keep going to hospital for treatments? Where would you like to be? That kind of thing.

That is much more difficult to plan for. As one of our colleagues with learning disabilities said:

"How can you plan for something you don’t know when or how it’s going to happen?"

Then there is PLANNING FOR LIVING. Thinking about What matters most to me, bucket lists and such like. Almost everyone was up for that.

You’ll undoubtedly hear more about all this over the coming months. Do sign up to this blog – and once again, WELCOME!